Monday, January 25, 2016

New LungNoid Support Community and an update!

First, I am not a lungnoid.  I do know of many NET patients who are.  A lungnoid is someone whose primary tumor originated in their lung or bronchial system.  We just recently lost our first support group member, she was a a-typical lungnoid.  It was sad.  One of the nicest ladies....

I received an email from the Neuroendocrine Cancer Awareness Network about their new Lung Neuroendocrine Tumor Support Community.  This community is part of Inspire, which also has a PNET (pancreatic) support community.

LungNET.inspire.com

I'm having trouble with their website today so I hope the link works.

My Christmas and New Years were pretty uneventful.  I did catch a cold and it really took me down for a bit.  I'm just now feeling better although my ribs are killing me from coughing so much!

I' had a cervical epidural injection of steroids in my neck almost two weeks ago.  It was one of the easiest procedures that I've had.  I hope it helps.  My neck is worse off than I thought was.  An MRI showed major stenosis, bone spurs, arthritis, flattening of the spinal cord and a herniated disk.  Argh. It feels better now but I'm also taking Celebrex.

I have a triple phase CT scan on Friday.  Then meet with my new Oncologist next Tuesday for the results.  I did get the results from my CgA and Pancreastatin blood tests.  My CgA dropped another point to a 2 (normal is 0-5), which is great but my pancreastatin went up 90 points!  Its above normal. I don't know why the CgA went down and pancreastatin we up but they do say the pancreastatin is much more sensitive (better) a test.  I know that it's the "trend" that matters.  Not one blood test result.

I'll update after my appointment next week!